I really need to hear something positive

[Adrian]

Hi dlg,

a few things,

as you know, my dad is in pretty much the exact same situation (very recent out of the blue discovery of Stage IV adeno with brain mets). The only good news we've gotten since this started a month ago was that late last week, the neuro onc. told us he was almost certain that the 3 brain lesions could be eliminated and that he could still take Avastin with his chemo. Besides that, nothing but bad news.

The attitude you've assumed is, I think, spot on. After we got over the initial shock and drama, our family's approach became one of taking one day at a time (the ultimate cliche, but in this case, true). (In my limited experience,) there are two hope-reducing, panic inducing modes of thought: jumping ahead to what the results of all of this could be and jumping back to the "I wish this wasn't happening" fantasy. In my family's case, I have done what I can to focus on where we are now, and making sure we know what the next step will be---but that's all. When you do that, you are able to look at even a little good news as a victory because you can "honestly" say that your situation today is better than it was yesterday. And you can live with the reality that you need lots more of those little victories. If you're looking towards the "final act," good news is only a temporary stage prior to the "inevitable" and if you are in the "wish he wasn't sick" place then good news is still in the context of the worst situation you've ever had in your life.

It's certainly difficult to get everyone in your family on the same page, but for what its worth, you might want to try telling your mom etc. something to the affect: "we need to start acting like a family who's father/husband is a survivor of serious lung cancer. We're not preemptively mourning a dying person, we are supporting a fighter." And if you want to pour it on rhetorically you can throw in for good measure, ["By god, if he wants to cut the grass, he will!!"]

best,

Adrian

[daddyslittlegirl]

Thank you for that. I just called my mom a little while ago. She sounded upset with me. My older sister doesn't call me anymore. All I do is try to bring hope to everyone. I don't unerstand what is wrong with that. I welcome any hope I can get (that's one reason why I'm here). Then, if I cry or get upset I'm criticized and told to "get a grip". I realize I'm not the same person use to be, but can you blame me?

[Adrian]

Ok. I will be terse because I'm on blackberry.

you said it "sounded" like your mom is upset with you and that your older sister won't talk to you.

I think a first step with both your mom and sibling is finding out (by asking them) what emotions they're dealing with---i think you are right to desire a united family front...and right now that's missing. And maybe simply expressing that is the way to begin talking to your mom and sister.

There is a chance that they won't (or somehow can't) buy in---but like everything else in our new lives, we can figure that out if and when it happens.

[nomadawn]

Hi,

Just wanted to let you know that you are doing an excellent job in the face of such adversity.I myself have experienced similar problems with my siblings and their negative attitude. I just 'shout the loudest' and talk talk talk to my mum about the success stories on this forum. I drown out all the bad vibes so to speak. Its hard and sometimes I dont even convince myself but I KNOW my mum and dad appreciate my outlook which is infectious to them. I used to get angry with my siblings but now I dont. I understand we all react differently to difficult situations and out reactions are often not ones of choice but instinctive. Nevertheless I always overpower with positivity at every opportunity and I always will that is my way and I am glad of it and I know my parents are. That said I have regular moments of despair, hopelessness and devastation - this is normal too but I manage to keep this under wraps for private moments.

You are a wonderful daughter, keep your chin up and god bless you and your family

Debbie

[daddyslittlegirl]

Thank you all for the replies. Debbie, it sounds like you are just as great of a daughter. I'm glad that you are able to share your hope with your mom and dad. Hopefully eventually your siblings will com around. The good news for me is that I had a long talk with my siblings and got them to at least understand where I'm coming from. One sister actually asked me to continue sharing the stories with her. My mom however is a different story. I have just decided that it's better not to discuss anything with her. That way we won't have any differences and cause my dad stress. But someway I have to get her to stop treating my daddy like a baby. She won't let him do ANYTHING. UGH!!! I keep trying to tell her to let him do whatever he feels he can. My dad is not at all use to sitting around doing nothing. She even clears his dishes for him. He HATES that. He constantly tells her "he can do that." He usually helps with the laundry and she won't even let him do that. She says he gets out of breath walking to and from and carring the laundry. How about taking him a basket of clothes and asking him to fold them??? He needs to feel needed. I don't know how to get this across to her. I appreciate her taking care of him and all, but sometimes I think she's actually doing him more harm then good. If anyone has any advice on how I can acomplish this without insulting her and putting her on the defense I would greatly appreciate it. Anyway, thanks for letting me vent and certainly thank you for the prayers.

[nomadawn]

Hi there, I am so glad to hear your siblings are being more responsive - well done !

With regard to your mum doing everything for your dad - I think maybe pretending to 'ask' your mum how she feels you can all still let your dad feel needed as you think this is really important for his wellbeing. What I mean is try and let her think she thought of the ideas - then you can maybe suggest things like folding the washing or any other stationary work which wont get him short of breath.I think also asking your dads advice on things - (even if you dont particularly need it) so he still feels in control and to be of use to you all. I go out of my way to get my mum involved in little chores and errands as well as helping me pick wallpaper etc etc.

Hope this helps a little as I know how difficult these things are

God bless

debbie

[tiredmom959]

Boy Adrian, for someone so new to LC, you have the exact right attitude in my opinion. We've been "dealing" for a year now ... at the beginning, it was total devastation. Then, you think, let's get her to the mid-point of this first round of chemo; let's get through that CT scan; let's finish that round up, etc., etc., It is best to not think any further ahead.

As you can see by my profile, my mom has even been through surgery now, and today she took her last chemo. The next (PET) scan won't be until late June/early July. I don't know if anyone else feels like this, but I have been taking her to chemo appointments, shots, transfusions, tests, for so long, it became a way of life the last year. Now that it's over (at least for now), there's relief, but I'm also SCARED! Like we should be doing SOMETHING besides just waiting. She should be taking SOMETHING. But I know this is the standard/correct/only thing to do at this point.

Your family sounds great and I hope the best for your dad. There is plenty of happy possible outcomes for him and I'll be hoping for them.

[Adrian]

DLG--

family situation sounds like an improvement from before. Cleary the more open and honest the communication w/in your support network the better.

with respect to your mom's treating dad "like a baby", I think what she is doing is understandable but I think she can be dissuaded. Here's my thought: I think she is confusing what is good for him with what makes her feel better.

In reality, good for him is keeping him in the land of the living--that is, active to every extent reasonably possible. My guess is, like everyone else in this situation, mom is battling feelings of helplessness---she doesn't know how she can help this person who she loves. So she resorts to doing his dishes etc.---keeping him "comfortable." Her reluctance to stop is, in my opinion, probably because she is scared that if she can't do this for him, then she can do nothing for him at all.

Moreover, as everyone ion this situation knows, its moments of activity where one can get away from the anxiety and restless thoughts.

The resolution is persuading her that her instinct to nurture is legitimate but is being misexpressed. Suggest to her that the way she can be most helpful to dad is to do everything she can to enable him to remain active and engaged. How can it help dad to make him watch the world go on without his involvement?

Tiredmom-

thank you for the compliment---coming from someone who is experienced, it means a lot because we are playing it by ear. Dad is now three days into WBR---hasn't even started chemo/avastin yet so the waiting game is truly frustrating.

as to your anxieties---They are totally understandable as when she's getting chemo, you're on offense---taking back territory---taking control. Going back to waiting reminds you that this process has so many different modes. Getting treatment sounds right to us---because all we want to do is kick this things *ss---but as we all know it is just more subtle than that. Sometimes its more like casting a vote in a hotly contested election and waitng for the results to come in.

[tiredmom959]

Wow Adrian ... once again, I have to totally agree with you, both with what you told DLG and myself. For DLG, It's tempting to "over-nuture" when you're afraid of losing someone, but it's not typically what is best for them at all. My dad told my mom in the beginning "why don't you go lay down" or "let me do that" because he didn't know what else to do or say. He got enough dirty looks from her and eventually realized he'd better stop treating her as though she was sick or something

I'm so-o-o sorry you have to be here, but glad to have your company and insight.

[kaneohegirl]

I too am a Daddy's little girl.... an only child for him... and the only support he has. My husband and kids are in this with me but there is only so much that can be done by them.

I am the ONE... the only... person to talk about things with... to take care of things... to be the HOPEFUL one for him... and the ONE to take care of the WHAT IF's.... and that really Damn hard.

you have family to support an take on different rolls. you are not in bed with your parents at night when they lay there talking quietly with eachother. the things they talk about may suprise you... and make you sad.

a persons choice to fight this disease is a personal one and you may not know everything going on in their brain there may be more pain/nausea/side effects going on than you know about. there may be more factors about how this disease was fought in the past that scares the crap outta them. there may be things that have been discussed with the Dr's than you are privy to.

if your Dad makes the ultimate decision to STOP fighting then your roll as the "HOPEFUL one to stop the disease" will need to change... for your own sanity my suggestion is to change to the "Hopeful one to have a good death"

I can share a link to another forum that chronicles a womans husband dying of lung cancer... it was moving and scary and made me see how things can be about dying. let me know if anyone is interested

[Adrian]

kaneo, what you write is compelling and I wholly agree that each has his/her own role with respect to supporting a loved one through this---(afterall there can only be one Hamlet in the play)... But while each has their own role---my view is that between each person, to the extent possible, attunement between people within the context of their unique roles is the goal.

As to the last bit about "if he makes the ultimate decision to stop fighting. . .," while I agree that the ultimate goal is not survival but unshakable support of your loved one's decisions, I think you're getting ahead of where DLG ---and her father---are right now. The underlying thought however, is certainly true and meaningful.

[kaneohegirl]

"Adrian"] while I agree that the ultimate goal is not survival but unshakable support of your loved one's decisions, I think you're getting ahead of where DLG ---and her father---are right now. The underlying thought however, is certainly true and meaningful.

yes true... but she says mom is talking a certain way and Dad says when the Radiation is Done he is done.... there is only so much more that you can do to push them into the path that you want them to take. at some point after talking and reasoning and maybe even begging that you have to reevaluate your stand. to beat yourself up over wanting to change the decisions your parents make for their own lives is fruitless and can create depression and other health issues for herself.

I live on a odd line... I have to be all things... the hopeful fighter of the disease... the maker of the what if plans ... the planner of the death and how things will go.... I can only walk so far in any direction before my balance is toppled. DLG you have the ppl to take on some of the pain and problems go with what you know and fight for what you want ... print off articles of survival... ppls stories here... get second verbal opinions of your Drs... but if the time comes that Dad says ENOUGH... KNOW you did enough. ((((((((DLG)))))))))

[daddyslittlegirl]

kaneohegirl,

I agree with Adrian you are WAY ahead of where we are. You are missing my complete point. First of all, not to be too personal, but my parents don't even sleep together at night. I understand that married couples have their private time and discussions that are between them. But than perhaps it should have stayed between them. Second of all, my dad nor I, am at the point to think about "having a good death." I am supporting my dad and his decsision to do what he wants including cutting the grass, clearing his own dishes, helping with the laundry, etc. and still being treating like a normal person!!!! Because that is what he keeps telling ME he wants!! (that he doesn't want to be waited on). What I am asking for (and venting about) is advice on how to get my mom to let him do the things he wants. My dad looks to me for words of encouragement and hope, so obviously that is what he wants. I have not pushed my dad to do ANYTHING nor have I "begged" him. I'm sorry that you have the burdon of doing everything for you dad, but perhaps there are other differences in our situations than just that.

[daddyslittlegirl]

tiredmom959,

Thank you so much for your kind words. It sounds like you know exactly what I'm speaking of. Hopefully, my mom will realize soon what my dad is trying to tell her too. I'm glad to have your company as well. God Bless.

[fillise]

DLG--It's great that your siblings are coming around. I wonder if there is a caregiver support group where your dad is getting his treatments. It might help her to hear from others that their loved ones need to be treated as normally as possible.

At some point you may have to accept that you can't change her. That doesn't make what she is doing right and it doesn't mean you have to like it, it just means it is out of your control and you can't change it.

Hang in there,

Susan

[kaneohegirl]

"daddyslittlegirl"] I am supporting my dad and his decsision to do what he wants including cutting the grass, clearing his own dishes, helping with the laundry, etc. and still being treating like a normal person!!!! Because that is what he keeps telling ME he wants!! (that he doesn't want to be waited on). What I am asking for (and venting about) is advice on how to get my mom to let him do the things he wants.

BTW I went back and read each of your posts... I think the thing that caught my attn the most was your upset at being told after this set of radiation treatments that he was done... thats where my comments were supposed to address.

okokok sorry I touched a nerve. yea the bed thing whatever but I dont know your situation I dont know anything about your family... one can make assumptions about living situations... and I guess the one I made about yours was that you mom and dad lived together ALONE so that creates time alone to talk whatever the case may be ... I just assumed that they would have time to discuss things away from the rest of the Family putting it in the situation of in bed might not be the right context.

you can only be your Dads advocate of let me do what I can while I can if he will take action for himself too. sit mom down talk with her tell her no matter what he is her husband and as a man he has dignity and so long as he is able he should be allowed to live as a man should ... Play up her need to take care of him by playing the mental caring card. tell her he could fall into a deep depression if not allowed to help around the house. then tell dad to take things back. get up an get on the lawn mower take back the dishes.... I mean really what are they gonna do have a tug of war... he needs to want these things too. enough to fight for them...

[daddyslittlegirl]

I don't feel my dad is ready to give up. He is a STRONG man. I think he's tired of going daily for the radiation and needs a break from that, but he's always been a fighter. He has so much pride and dignity which keeps him going. So I don't want my mom "overcarring" for him by telling him he can't do things or doing them before he has a chance to. My brother and I feel the same way. But when we say anything to her she gets defensive and makes comments that we don't think she can take care of him. I don't know how to make her realize that, even though she has good intentions, she may be doing too much. If he's treated like an invilid he will lose his pride and dignit and fight, then we there won't be any hope. Anyway, I'm sorry if this sounds redundant, but it's bothering me on a daily basis. Thanks for listening.